INBW23: What I Said at the Rare Disease Roundtable Last Week
Relentless Health Value™July 04, 201915:5921.95 MB

INBW23: What I Said at the Rare Disease Roundtable Last Week

Last week I was invited to attend and present at a Rare Disease Roundtable hosted by Health Catalyst and McDermott Will & Emery in Boston. A colleague from Aventria Health Group and I were there to talk about ways to enlist stakeholder collaboration throughout the rare disease patient journey.

 

When not hosting the show, Stacey is co-president of Aventria Health Group, a marketing agency and consultancy. Aventria specializes in helping pharmaceutical, employer, pharmacy, and health system clients improve patient outcomes by creating and leveraging collaborations with other health care organizations. For more than 20 years, Stacey has innovated better-coordinated health solutions benefiting all stakeholders and, most of all, the patient.


00:43 The rare disease patient journey.
02:03 The burden to stay on top of clinical developments falls on patients.
02:14 The major problem with patients tracking clinical developments in rare disease.
03:42 Stacey’s personal journey with a rare disease.
06:19 These stories aren’t unique; there’s a hard reality around rare disease management and treatment.
06:37 “Rare disease management takes stakeholder collaboration.”
07:00 “Payers … need to pay for evidence-based approaches.”
08:04 Rare disease management requires coordination between points of care.
08:57 The tough ask behind improving rare disease management.
09:41 Why Pharma is primed to affect organizational change.
10:50 “It is less about an individual patient … and more about a population of patients.”
11:34 The effort required to collaborate to treat rare diseases has to be less than or equal to the perceived reward.
12:06 “What Pharma needs to offer up is more than a molecule.”
12:47 Account managers, go to aventriahealth.com for blog posts on helping account managers develop the skill set to create collaborative relationships.
13:28 It is best to include clinical trial endpoints in the package insert that reflect institutional and/or payer needs.

 

RARE,care,collaboration,digitalhealth,disease,health,healthcare,marketing,tech,

Recent Episodes

Encore! EP384: How Shareholders Impact Carrier Behavior, Exactly and Specifically, With Wendell Potter
February 06, 202535:0132.05 MB

Encore! EP384: How Shareholders Impact Carrier Behavior, Exactly and Specifically, With Wendell Potter

I am drowning in all things Q1 right now. So, this week we’re going with an encore. But this is a great show to go back and reflect upon, as it’s about carriers and how shareholders impact the actions of said carriers. For a full transcript of this episode, click here . If you enjoy this podcast, b...

EP462: Managing Populations of Whole, Actual People Who Are Not the Sum of a Bunch of Different Body Parts, With Scott Conard, MD
January 30, 2025
462
33:3430.73 MB

EP462: Managing Populations of Whole, Actual People Who Are Not the Sum of a Bunch of Different Body Parts, With Scott Conard, MD

Hello, Tribe. I hope everyone is holding up in this Q1 where there is so much going on. I feel like I’m juggling 10 plates while running on a treadmill that keeps stopping and starting at random intervals. How you doing? For a full transcript of this episode, click here . If you enjoy this podcast,...

INBW42: A Philosophical Rabbit Hole of Considerations for Plan Sponsors and Others
January 23, 202527:3925.31 MB

INBW42: A Philosophical Rabbit Hole of Considerations for Plan Sponsors and Others

There have been two episodes lately that have sent me down a rabbit hole that I wanted to bring to your attention. Now, disclaimer: I know you people; you’re busy. You listen on average to, like, 26 minutes of any given episode. So, yeah … look at me being self-aware. I say all this to say welcome ...

EP461: Pick Only One, Plan Sponsors: Do You Want to Control GLP-1 Volume or Control GLP-1 Unit Cost? With Chris Crawford of RxSaveCard
January 16, 2025
461
22:4220.78 MB

EP461: Pick Only One, Plan Sponsors: Do You Want to Control GLP-1 Volume or Control GLP-1 Unit Cost? With Chris Crawford of RxSaveCard

This episode with Chris Crawford, CEO of RxSaveCard, is not about the when, why, or how of GLP-1s for weight loss or best-practice prescribing; and we do not wade into anything about lifestyle changes or who is adherent or clinical considerations and needed support. There are a plethora of shows on...

EP460: Rushika Fernandopulle, MD’s Theory of Change Starts With Status Quo Healthcare
January 09, 2025
460
41:0437.6 MB

EP460: Rushika Fernandopulle, MD’s Theory of Change Starts With Status Quo Healthcare

This is one of those episodes where we consider top-line strategic imperatives and key drivers. I thought there was no better person to do this with than Rushika Fernandopulle, MD, who, in case you were unaware, was the founder of Iora Health, an advanced primary care group that was sold to One Med...

EP459: Cost Containment by Co-Pay Maximizer or Co-Pay Accumulator: Points to Ponder, With Bill Sarraille
January 02, 2025
459
39:4736.41 MB

EP459: Cost Containment by Co-Pay Maximizer or Co-Pay Accumulator: Points to Ponder, With Bill Sarraille

If you have zero clue what co-pay maximizers and/or co-pay accumulators are and the financial incentives involved for PBMs (pharmacy benefit managers) and plan sponsors here, after you’re done listening to this episode, go back and listen to the show with Joey Dizenhouse ( EP423 ). Also, the episod...

INBW41: End-of-Year Wrap-Up and My Personal Charter Encore: Where the Rubber Hits the Road
December 26, 202425:5223.67 MB

INBW41: End-of-Year Wrap-Up and My Personal Charter Encore: Where the Rubber Hits the Road

Okay, so, we’re gonna go with personal charter. Just, yeah, given everything going on right now, yeah. It is a charter, not a manifesto. Because of the end-of-the-year status of this episode, I just want to kick this off by giving a big thank you to everyone listening. But this isn’t a thank you fo...

Listen and Follow

Sponsored by Aventria Health Group
©2025 BD Bridges LLC. All Rights Reserved.